That being said, the first rep I met, very nice girl and seemed to know what she was doing, I can't fault because she did the program directly after surgery,,,,,you can't get a good read at that point. Too much inflammation, not enough set to get a good read to do a good program.

Second programming was by the Doc's surgical PA who is an artist at this...amazing she's so good. She must have spent an hour trying to just get it a little bit better.

Now I see my local (st louis) Rep next week. Now she's never done this before but sounds enthusiastic and is going to set a new group for me rather than change this program.

I see the "artist"in Cleveland in Mid March and I am going to have her set yet another group, so I'll have three programs and I'm hoping that will get me going, so once I get the ok on everything scarring I'll be able to start some mild exercise,

So,,the medtronic Reps I've dealt with have been top notch. Will they work with another machine,,,I'm inclined to say no but if you are really desperate I will give you the CS number and my Rep's number as long as it's off this forum and on private messages,,, and I will pass my local girl's number once I get it,,,,your call.

So sorry you are not getting the support you deserve with this kind of machinery. How can WE do anything with this with out help???
Makes no sense,,,,

Besides that healing ok, my right arm still hurts from overdoing it when I first came home (laundry) and then the first battery charge didn't help so it's still sore,,,other than that,,,tired, real tired, but I can manage. I have pets not kids.

It's managing the pain ok,,wish it was a little better, I seem to turn it up higher at night because it really helps at a higher level but it has a tendency to pull my muscles in odd ways, which are ok at night, I mean my eye is closed anyway at night!! so that's what I'm doing until I see this new rep (who I will ask off the record about this issue) or until I go back to Cleveland and have my bump removed as best as possible....

Let's put it this way,,,it has got to be better,,,my son woke up the other morning and texted my husband "well it must be working,,,she just yelled at the dog and threatened to kill him" life is returning to somewhat normal........

I am pretty sure a medtronic rep Will NOT work on a St Jude unit . Beth your so nice to offer the info but dont think it would help.I am passing info to the ladies of a st jude rep in colorado who is good anyways I sent you email. thanks for the contact it is sooo much easier to chat email sometimes.
PEACE
BMW

Beth thanks for posting, I am still struggling to get my strength back after surgery your pictures look alot like mine, I am glad you are having success with reps so far, I am headed back to Chicago Monday just to meet with the Rep who was in my surgery with me in hopes of getting a good setting, I was a good 10 weeks before the soreness where the battery is wasnt sore anymore, recharging the battery wasnt fun the first time, just so gash darn tender there I hope you have good luck with local reps and sounds like you are being way more patient than I am, I want a good setting and I want it NOW!!!!!!!!!!!

Hi
This is Cheryl Lewark and my journey is detailed in the beginning of this thread. It has been a very long time since I have been on the site. For those of you who know Tina " Marshmellow" has been the God Sent for many TN and AD suffers. I talked to her often. Today I realized how long it has been since I had been on the site. My stimulator is still up and working like a champ. Thanks to Tina she encouraged me to look into the stim and each day I am so grateful. I am going on having it for 2 years now with no problems.

For those of you who are fortunate to get to know Tina, you are blessed to have her in your life. She wil always be there for you when you need her.

Please go to her thread and introduce yourself. You will be happy that you did. Read my story and If you feel that I can be of help get in touch with me.
It is about the 4th one down from the first page of this thread.
God Bless All Of YOU
Cheryl Lewark ( calewark)

Cheryl, so happy to see you here, and lord knows I would not have made it without Tina behiind me the whole way I have thanked her over and over but words just aren't enough- I sure wish the St Jude Reps in your area could educate the reps here, I have had 3 different reps- 1 messed everything up so bad she told me to turn off the stim and go home, 2nd one never heard of tn and took close to 2 hours to add a program that didnt work, 3rd one I have met with over and over and twice last week and finally got a program that worked for 1 full day then relief gone and no other program to go to, so I am off for the 5 hour trek Monday back to my rep that was in surgery with me, I am praying he can give me some settings that 1. will work and 2. will stay working- I am 12 weeks post op on tuesday so I am getting very frustrated so wish me luck all for the "cold" trek to Chicago!

you my dear are the patient one I would be on the phone to the customer service department and I would yell, scream, cry (that works!) and have them find someone or TRAIN someone in this area of stim work.
Listen, if as we hope, this will be FDA approved this year for TN there are going to be a lot of Reps that need to be trained,,,,somehow I think there had to be a way to make that understood,,
I did speak with the Rep for Friday and she seems,,,ok, I am going in open minded but I have a fall back, I can always go to Cleveland and do this,,,so she can't mess me up since she will be setting a new group not changing my current program....
I would give them one more try and then I'd raise the roof!! Good Luck,,,,my prayers are with you,

so First Kat -YES Keep your apt and fly to see Kevin Bacon tomorrow. ask him the things we talked of ...who will be rep when the move happenes Also can he write down the program info he dose as he tweaks it and that very provide info to you AND Amy so when you are back home ...
I in my opinion don't not think beating the nerve hard with the stim and making the pain flare bad while stim on ..then shutting it off is when you get relief no not making any sense to me. if that is the theory what use is a stim as each and every one of us can just slap ourselves in the face with a hammer for an hour or two and once we stop we will get relief. So get some real food in your tummy a good nights sleep and in the morning safe travels andonce your are there Get Your B on . be firm and know we are all praying things go well and that the good will last super extra long long time after .

Cheryl Thanks for saying such nice things I myself dont think this surgery is a very hard one to have done and they way they are doing this surgery today compared to when I had mine done.. lol . I had my final not stitches mostly staples and I had to wait 21 days after my final surgery to have my PNS turned on. you all are getting programmed and have the stim on right after surgery and everything is different.

I think that is a bit of a problem there are many more people being offered this as an option and not as many experienced programmer reps to go around for certain areas of the country or perhaps it is more doctors choose to use one company more then another so the demand for a good rep with that one compnay is higher and ...
I do not at all think or believe there is one maker that is better then another I just know the PNS work's for me and for others. IT DOSE NOT take all the pain away you are NOT pain free this is just to help control the pain and knock it down to a lower level

Beth Thanks for posting and I just got done writing to you ... I still havent had that cuppa coffee I mentioned but am off right now to get it . Sending my prayers for all .. ALL of us... the readers ,the posters here in the forum, the ones on the side lines , to have a low pain rest of day and night ..may sleep come easy and rejuvenate and energize body mind and soul. Prayers and Blessings may tomorrow be the start of many many good days. PEACE
BMW

For everyone and maybe we are all a bit pain free tonight.
So, I am beginning to learn something, I really don't think that the Rep from the company is always the best person to be programming or reprogramming these units. I'm believing that there is someone in that MD's office that is the expert.
This is an art form,and no rep, in fairness they are not trained the same way and have a general idea of many different areas, whereas somebody in that neuros office specializes.

In fairness I'm just starting to learn this process but,,,,,,when the docs PA started to make the feel of the leads go in a circle, I knew what the comparison now was. the intricacies of this one little part is positive now it's negative what does that do, how do I literally "pull" this pain away from where I need to,,,,,I'm an intelligent woman and I know an art form when I see it.

I don't know that the reps have time, skills,training or damn it, understanding of this disorder to do that well with a unit that really works for us. I spoke to this medtronic Rep I see on Fri and said I 'd like a new group, don't want to loose what I do have, and in fairness I'm not a pushover and she picked up on that pretty quickly and I asked her do you know anything about the disorder? and she said no but I've done inter cranial lead placement,,,,,SO WHAT??? that's not what this is, don't try and impress me, impress me by saying, no by I will by Friday, that would give me more confidence.

There are so many factors involved but I've had this since late Jan, they'll bury me with it. It's not perfect (I'm too lazy to change my font!!) it won't be for a long time but it does reduce the pain and isn't that what we all say,,,oh god if it would just break even a little,,,this is way more than a little.
I'm backing off meds, I' generally just feeling better,,,not fighting pain so much perhaps?

I've learned that I will most likely have to go back in and have them move this lead slightly, had hoped I was done with surgeries but to get the best performance from this we need to do it before too much scar tissue forms. He'll make a small incision and use the extra lead in the loops above my ear, find the right lead and pull it back just enough so it falls down rather than going up. If it works (and these are all ifs) then I should get better pain coverage on my lower jaw,,,,that's the goal. Probably mid March, we give this rep a fair shot,,,I'm staying open,,,if that doesn't work, back to cleveland let them try a reprogram and in a day if no results, back in OR,,,,I'll keep you posted if I end up going that route,,,

My prayers go out to all of you with units that you know you should be getting better results from and aren't, hang in there and don't give up,,,medicine is a service related industry,,,you wouldn't accept a bad meal at a restaurant that you're paying for,,,don't accept less than quality medicine,,,just keep trying, you'll find the right person......Peace, Beth

Beth it has been nice getting to know you more in emails. Wow you have been threw a whole bunch ! the bump issue sounds kinda serious and I am praying the doc will work the magic and you gave a positive update of the apts. we are keeping you in our thoughts and prayers. Speaking of Thanks for yours you sent out . and YES YES you are right when you say
" ,medicine is a service related industry,,,you wouldn't accept a bad meal at a restaurant that you're paying for,,,don't accept less than quality medicine,,,just keep trying, you'll find the right person.."
but the crappy part of it all is one really dosent have a choice they just end up getting not so good treatment over and over. It plays with your thinking . you become afraid to speak up or force any issues for fear of getting treated even more badly next time. I am so thankful for this place here where others can meet and find info support and understanding... from that comes knowledge power and hope... . Thanks everyone for sharing and caring. It helps more then one will ever know!!!!!
Kat way awesome getting contact with Huston and mission control. for apollo 13 . . very lucky with your niece and her wisdom tooth.mention the Trig nerve to me and I will be white as a sheet too.

Now time for a weekend to try and relax ... sending low pain, Courage,strength, prayers and Postive things for all the posters ,readers and ones on the side lines. Blessings for the best of the best to everyone !!
PEACE
BMW

, I met with the Rep here in STL and nice girl, tried very hard was patient with the process and walked away with little more than what I walked in with.
We worked for probably close to 2 hrs and she was so, out to prove she could do it,,,,,,,well after that wore off and the reality that she was in over her head became more obvious the real work began.,
She did try and she did no damage on that I still have my original group which works and if not for the bump I would not be looking to change very much. But she looked at the bump and saw where it is when I turn the stim on for best pain control and agreed that it is too close to the skin and should be fixed.
So for me it will be back to Cleveland and see if Erika can tweak the programming and if not we'll do the surgical procedure to fix it.

Still can't complain, got chewed a bit for trying to cut back too far too fast on my meds, I still have a very bad back that I need to control the pain on and I think my pain doc is afraid of me forgetting that it's still there and have a real set back on that issue,,,I have a small habit of over doing things,,,who knew??

Anyway, there are still other reps here I can try but I'm happy except for that one lead issue,,,so no reason to. Off the record, the problem with St.Jude units and Reps seems to be well known, my heart goes out to anyone who has this hardware and is not getting it's full working capabilities because of improperly trained people. I asked, she's going to ask around anyway just to see,,,of course she said she knew no one but the look was,,I'll make a few calls,,don't expect any results from that but it was worth a try.

I still say this to anyone who is ill, if this were your mother, or your child, would you accept less than service or care,,,,or would you fight? doesn't mean you have to yell and scream it means you keep pushing and keep looking and keep doing until you find the clinician you need. You are entitled to a 2nd opinion,,,get one. There is great health care out there, sometimes it's an old family MD who knows more than you think or a big clinic you didn't know existed,,,,just don't stop looking. I guess it's a sore point for me....as a support group leader I had one patient give up (permanently) before I could get him the help he needed,,by a matter of a few weeks, that one has always been the one that bothered me the most, because I was so close to getting him the help. I just don't believe in taking less than the best I can find......anyway too maudlin for here,,just keep on reaching out. Were it not for one chance ER visit that I almost didn't do, I would not be here massively pain reduced.
I believe you own your own health care (most of us at least) and all too often we give that power away to MD's because they are MD's. Just think about that the next time you have to see your MD for something. All this postulating from a woman whose mammogram is SO overdue, but now that I am better I'll get it done.

And for the really happy note,,,,back driving again..WOOHOO!!! I think it may have been almost a year maybe more,,so long without the freedom of just going by myself,,,god the feeling of regaining life,,it's a gift. Just put the top down and go for a drive on a nice day or take the truck and get my own gardening supplies....I'm looking forward again and that is a great direction to be looking in,,,,

I wish that for all of us,,,looking forward, not back,,,hope springs eternal....my love to all